What started as a personal journey of a doctor turned patient morphed into a way to share what’s universal in dealing with cancer, in my case a nasty leukemia (CLL), a failed transplant and a successful clinical trial. The telling of my journey has become a journey to teach about CLL, related blood issues and all cancers. Please visit our new website http://cllsociety.org for the latest news and information. Smart patients get smart care™. If you want to reach me, email bkoffmanMD@gmail.com

Monday, March 2, 2009

Letter to a friend at the beginning of February, 2009

I wrote this before I had any recent results. It is minimally edited to protect the recipient's identity.

Captures a moment in time. Seems like prehistoric time.

Here goes:

Dear Friend,

Seems my pattern is to wait too long to write you in the hopes of sending mail filled with only great news.

No such luck. I have both good and bad results.

Truth be told, my life remains full of hairpin turns, made in the fog, on icy roads, while listening to Leonard Cohen. But I am still on the road.

Let me catch you up.

As you may recall, the hematopoietic stem cell (bone marrow) transplant went off without a hitch on Canada Day, July 1, 2008. Unbelievably, only three weeks later I was sent home. No transfusions. No IV feedings. Except for a few storms of nausea and vomiting, bone deep fatigue, and the loss of my hair, it was scary how easy it was.

Turns out too easy. My dysfunctional “host” immune system that nearly killed me a few times in 2007-2008, somehow managed, despite the onslaught of big time chemo, to fight on well enough to “protect“ me from what was to be my life saving foreign graft. It turns out that with all my vegan ways and meditation and weight training, I was too damn healthy, and rejected the bloody stem cell transplant that was meant to cure me.

Which means I will likely have to do the whole tortuous process again. This time with a bigger hammer (read stronger chemo, read more time crawling on the floor and hugging the toilet). Without a newly installed immune system, the risk of relapse is very high.

Or maybe not. The great news is that on my last tests, I was 100% cancer free. Occasionally those who reject the transplant, also reject the cancer. Like throwing out the baby with the bathwater. I may be cured and just not know it.

A CT scan and bone marrow biopsy later this month will determine if I am heading for the redo, or back to work.

My “host” immunity may have thwarted my plans for a peaceful transition of power with the goal of my new donor’s cells taking up residence in my executive branch and running the show, but it is not yet strong enough for me to return to the world of sick people that was my workplace as a family doctor. I am hoping to return to the office after the flu season if I get my doctors' OK.

In the meantime, to fill my time with meaning, I have been writing. My blog http://bkoffman.blogspot.com has had about 55,000 hits and Purdue University has proposed a study using my site. My readers have encouraged me to make a book from what I have learned and written about. It feels right.

The book will be a narrative non-fiction with the working title: The Difficult Patient.The subtitle for now is: How a Contrarian Attitude Saved My Life and Might Save Yours.

It is an anti-inspirational comic tale about how to demand and get a recut and reshuffle if you don’t like the hand you’ve been dealt. It celebrates brokenness and chides forbearance.

For me writing is demanding. I know dry science writing, but this is a entering a whole new world. In a universe full of agents and publishers, I am arming myself for the upcoming battles. Fighting for one’s art is nice work compared to fighting for one’s life.

Patty and I have not traveled much due to my health, but I am going to NYC in March to lecture, maybe meet some agents, and get some expert opinions on what to do next about my cancer and my book. My mask came off in November.

In April, I am scheduled to do stand up comedy to introduce the keynote speaker at an International Leukemia/Lymphoma Conference in Niagara Falls, Canada.

My son, Will, the artist, is back from four months in Italy and is busy with his fine art and illustration. My son, Ben, is showing his latest film about the orbiting Spitzer infra-red telescope at a local film festival, my daughter, Heather in NYC is writing the bar, and my oldest daughter and son-law, Rachael and Nick, who you met, are traveling around the world on a scholarship studying the architecture of American military bases and how they effect the surrounding communities. Very sweet. They’re in Hawaii this week.

I will send you a shorter note when I get my CT and biopsy results and map out my next move.

Love your book title / sub title...its a success story...which makes what is going on now more great material for your book that will strengthen and encourage others.You did call this an adventure...remaining prayerful.

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About Me

BkoffmanMD@gmail.com
A family doc and husband of 1 and father of 4 and grandfather of 3 who loves his family and his work. I live with no TV and no microwave, but wouldn't last a minute without friends, art, music, books and the beach. Hockey, good jokes and exotic travel are pretty important too. Writing, Talmud and Zen give meaning to my life. My diet is organic vegan, often raw. I hope the blog makes the load lighter and the path both safer and more fun for those who read it or are going to similar places. I want to help. I crave your comments. If you are new to the blog, check out the portrait my son Will painted (it is the first post), and my very first text post.